Couple hosts Fort Wetherill walk for stroke awareness

By Margo Sullivan

Imagine taking a newborn home from the hospital with a clean bill of health only to find out months later your baby had suffered a stroke at birth.

That’s what happened to islanders Jeffrey and Jill Ball. Their son Gregory was only four months old was he was diagnosed. The news came as a shock, as did the growing realization that parents and doctors are still in the dark about treatment and the prognosis.

Gregory, now 11, has made progress, despite the challenges. He said that he loves reading and works hard at Lawn Avenue School with his two teachers, fifth-grade classroom teacher Michele Desrosiers and special education teacher Denise Fiorio.

He did not walk by himself until he was 28 months old. Up to the moment he took his first steps, his parents could not be confident he ever would let go of their hands.

“Greg is fine,” his mother said. The problem is, no one knows what to expect in the next two or three years.

“Will he get better?” his father wondered. “Will he stay the same or will he get worse? No one knows.”

To get answers, two years ago the couple started the annual Childhood Stroke Awareness Walk.

The first year, 28 people came to their house and strolled around the neighborhood, she said. In their second year, participation nearly doubled.

“We started small,” he said, “[but] we add something new every year.” Last year they posted signs around town and launched a new Web site to helped advertise the event; 50 people attended.

This year’s walk kicks off on Saturday, May 14, at 10:30 a.m. at Fort Wetherill and includes a silent auction. Registration forms are available at Baker’s Pharmacy, McQuade’s Marketplace and the Jamestown Philomenian Library. Registration fee is $25 for adults and $10 for children. All donations go to the non-profit organization CHASA, the Children’s Hemiplegia and Stroke Association, based in Dallas.

“The goal is two-fold,” Jill said. “Number one is to raise awareness [that] there is such a thing as childhood stroke.”

The second goal is to fund the research and find out why childhood stroke happens and what parents do afterwards, Jeff said.

Many people are surprised that a stroke can happen to children, but new research, Jill said, shows that one in every 4,000 newborns and one in every 8,300 youngsters from one month to 18 years old are affected.

“They’re starting to do research and collect data,” Jill said. Unfortunately, she added, no controlled research studies are happening to evaluate treatments so far.

Indeed, parents don’t know what to expect because of the dearth of research into childhood stroke, said CHASA Vice President Julie Ring, of San Antonio, Texas.

“You don’t know until the child reaches a milestone — or doesn’t reach it,” Ring said. Her 3-year-old son, Evan, suffered a stroke, probably “a couple of hours after birth,” she said. He was not diagnosed until he was 6 months old after her mother insisted something was wrong. She had noticed the baby did not use his right arm or leg.

The news devastated her, she said. “It’s an adventure you don’t want to go on.”

“I felt guilty, overwhelmed,” Ring said. “I felt it was my fault.” She joined CHASA for contact with other parents whose children overcame childhood stroke. They learned to walk and swim — feats that once seemed impossible for Evan.

“These kids figure out a way to make it happen,” she said. “There’s a lot of hope out there. It inspires all of us.”

Her son did not walk until he was 2 years old and she still cannot be sure he will develop just a little more slowly than other children. She also feels anxious about his future and wonders if he will have a learning disability or develop a behavioral problem.

“He’s doing really well,” she said with help from physical, occupational and speech therapy. “He works hard and he has the best personality. He doesn’t feel sorry for himself.”

The Balls had a similar experience. They noticed a problem one day while playing with the baby. The couple saw he was using only his left arm to reach for toys, even when they moved the toy close to his right arm. A visit to the pediatrician resulted in a referral to a neurologist and the discovery.

Childhood stroke can be diffi cult to detect, particularly if the infant does not have seizures, Jill said. Greg did not have any symptoms and his reflexes were normal.

“For us, every day is a new day,” Jill said. “Some days are great; some are not. Anything he does — even things that would seem so small to other parents — is a really big deal to us.”

Greg will also do the mile walk on May 14 at Fort Wetherill, but the fifth grader admitted — with a shy smile aimed at his mother — he most looks forward to eating the cake at the finish line.